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Showing content with the highest reputation since 02/15/2020 in Posts

  1. 7 points
    DFK

    Durvalumab

    Happy Friday to All, February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕 Questions I had for Oncologist 1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero. R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators: Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 2) What now? R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months. I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. Thank you everyone for your support. Take care, DFK
  2. 3 points
    Curt

    358 Days Post RUL Lobectomy - Diamond Head

    I convinced my wife to hike up Diamond Head Volcano in Oahu yesterday. First I didn’t see any diamonds. Second it has been dormant for 150,000 years. Can you call a lake a lake if it hasn’t had any water in it for 150,000 years? What about a volcano that doesn’t have any lava? Anyway that’s not the point. The point is 358 days after I had my upper right lobe removed via lobectomy I hiked to the top of a volcano. It’s not a big volcano, but it’s a volcano. 760’ at the highest peak. We were told it would be about a half hour to get to the top. My brain said we’d be there in 20 minutes. 45 minutes later we made it to the top. About 15 minutes in I got scared. The feeling that maybe I shouldn’t be doing this, maybe I couldn’t, set in. My brain isn’t use to telling my body to pace itself. It just runs off up a volcano without a thought in the world. But then my body tells my brain that I need to slow down and pace myself. There were some spots that added to my concern. I got short of breath and had to stop a few times. About two thirds of the way up there is a 225’ long walking tunnel. The air felt kind of tight in there. Maybe it was just Claustrophobia. As soon as I got out of the tunnel I was confronted with 99 steps, felt more like a ladder. After that a few flights of spiral stairs in an old military concrete building. Then the final 76 steps to the top. Most people say the view at the top is worth the effort. For me the view was secondary to the accomplishment I felt getting up there at all. If I can do it so can you. Mahalo!
  3. 3 points
    Rower Michelle

    Biopsy today

    Hi there Welcome to the Lungevity Family. Feel free to post anywhere, most typically use the Member Updates or General tabs. There’s quite a few regulars here so not to worry we’ll find you. You’re getting closer to a treatment plan as these complicated diagnostics are moving forward. Baylor is a sophisticated health system, be sure to ask about comprehensive biomarker testing as there are many sub types of NSCLC. It’s important to know if there is any further treatment required. Lung cancer is like being abandoned in a foreign country, the learning curve is steep and in the beginning four ears aren’t enough to take it all in. Most physicians will allow the visit to be recorded. I’ve found it helpful to email questions to my doctor in advance of the appointment. As the old saying goes the only stupid question is the one that doesn’t get asked. Allow yourselves time to adjust to the new normal, once the treatment plan gets going then things will settle down. Nice to meet you- we spent some time living in Flower Mound- pretty soon the blue bells will be out. Michelle
  4. 3 points
    Lisa L

    No diagnosis yet

    I’m watching your story pretty close, I have 9mm nodule in left lung found a year ago, said spiculated. I freaked out to say the least thought I had 6 months to live, was a total mess. I found this group and immediately calmed down and felt so loved by a group of people I had never met. First thing I did was get a fab pulmonologist, he ordered a Pet and it came back no uptake at all, had a ct 4 months later and nodule was the same so had ct 4 months later and again the same so my pulm says it’s either benign or cancerous but indolent and might never even hurt me in my lifetime, I’m 53. I have another ct scheduled at end of month but guess what insurance denied it so got to go through the whole loop hole and prob will have it end of March, I’m fine with that and My pulm is fine with us continuing to scan probably forever even if I would have to pay out of pocket. I’m so glad you found this group, I’m glad you have a good team with a plan, just wanted to share my story. Love and Light ❤️
  5. 3 points
    Tomm

    Durvalumab

    DKF really happy to read your success and joining the NED club. It's nice of you to let others know that PDL-1 is not required to get NED. When you come to Oregon if you find yourself and husband in Eugene there is this https://www.eugenesaturdaymarket.org/ ..the longest running saturday market in the USA. Two Hippies are walking down a railroad track stoned.. One Hippie says "This is a really a long staircase!" The other Hippie says "I don't mind the stairs, it's this low handrail that's killing me."
  6. 2 points
    DFK

    Durvalumab

    Thanks Barb, Michelle and Grahame for your kind words of support. It would be no surprise to anyone that I had a sleepless night prior to my MD appt to discuss PT/CT results. I felt especially vulnerable since I was experiencing new aches and pains from the flu. Pulled a muscle below my ribs from vigorous coughing and strained my lower back, again from vigorous coughing. In my mind, these were solid indications of metastasis to my ribs and spine. As I mentioned before, fear of the unknown are horrible victors and there are no boundaries as to what my overactive mind can conjure up. My dear husband is always tasked with pulling me back to earth from the stratosphere of the "C" what if's. Ron H, thanks for reading, how are you faring with treatment? Tomm, Tom, Curt, thanks for reading and your support. TJM, thanks for reading and welcome. Your tenacity will take you far. Early on in my treatment, I had a little secret that I kept to myself. During my bike riding, I envisioned that with each stroke of my foot pedal, I was killing "billions" of cancer cells. It became my reason to never miss a ride. Even when the weather was iffy, or I just wasn't feeling the love, I still had my task of killing billions of cancer cells. One especially rainy day, there was a break in the clouds and I ran outside, bike in hand screaming to my husband, I've got to go, I got some cancer cells that need killing. He of course was befuddled but knows that in my "C" world, I am always trying to work things out. Take Care everyone, DFK I was wondering all night where the Sun had gone, then it "dawned" on me.....
  7. 2 points
    LyndaT

    No diagnosis yet

    Saw the surgeon this morning. He basically has no doubt this is cancer and believes it is Adenocarcinoma Stage 1A. He says I need a total lobectomy because the tumor is too deep to resect, biopsy, and then decide. He says a needle biopsy is not recommended as he thinks this needs to come out no matter what based on what it looks like. He will remove the lobe and the surrounding nodes with robotic surgery. Based on the PET he expects the nodes to be clean. He believes the surgery alone will be curative and no further treatment will be needed. He said there is a chance they remove my lobe and it comes back negative, but that chance is less than 10%, and not worth the risk of waiting. My surgery is schedule for March 12. Really still trying to wrap my head around this, I am kind of numb right now, but having a plan does feel better than not knowing. Before all of this happened I had a business trip to London and Paris, leaving tonight and coming home Wednesday. I am going. I feel like this will be good to keep my busy and hopefully take my mind off this for a few days. Not sure though, this could be a big mistake too
  8. 2 points
    Grahame Jelley

    Durvalumab

    Hi DFK what wonderful news . An inspiration to us all to continue the fighting our journey. Positive approach you took has paid dividends it seems . Look forward to reporting similar success in the future have a great holiday Grahame
  9. 2 points
    Yay Curt!!!!!! Mahalo
  10. 2 points
    Barb1260

    Durvalumab

    Yay! Congratulations
  11. 1 point
    TMC

    Biopsy today

    Well today is the day! We have our biopsy at Baylor Hospital this afternoon. I'm very nervous but staying hopeful. We were supposed to have our PET scan yesterday but the darn machine broke down so we are now scheduled for Monday. I'm so ready for a game plan but from reading this forum I understand its going to take a little time. My husband is staying very positive and just wants to get back to his normal life Wish us luck! T
  12. 1 point
    BridgetO

    No diagnosis yet

    Hi Lynda, Your situation sounds a lot like mine. I had my lobectomy based mostly on my doctors' opinion that my nodule was likely to be cancer based on its appearance. It was in a place where it couldn't be biopsied without the lobectomy. I had surgery by VATS. Sure enough it was Adenocarcinoma 1A. I thought the surgery was fairly easy as surgeries go. My recovery was fairly fast and I have no evidence of disease more than 3 years later. Please feel free to ask whatever questions you want and tell us what we can do to support you.
  13. 1 point
    BridgetO

    Durvalumab

    Yay for you and your new best friend NED!
  14. 1 point
    TMC

    Biopsy today

    Yes, we are being treated at Baylor downtown also! We are really happy with the care we got there. Thank you for the advice about recording, I'll be sure to ask if I can do that next time. My husband had a lot of coughing after the bronchoscope or however you spell it so he just went to bed when we got home. But hopefully tomorrow he will feel better. He has been in GREAT health with no symptoms other than the cough up to now. So far we have been happy with the team our regular internist has referred us to. Our Pulm. doctor seems to be top notch and said he has 4 thorisic surgeons (my spelling sucks) he uses and was hoping to get his results over to one this weekend to look over. Right now our biggest prayer is that it has not spread and they can find a way to do the lung removal. The doc does say the whole right lung needs to go. He did say if it can't come out right away it might be possible to do some chemo or radiation to reduce the tumor so they could do a surgery later...is that common? Oh lord I'm going to have a million questions on here? Is that gonna be alright? I just want to be on top of things and I have no idea how to be an advocate for my husband.
  15. 1 point
    TJM

    358 Days Post RUL Lobectomy - Diamond Head

    Such an awesome post. Pin it in the good news Forum. Well done Curt! Peace Tom
  16. 1 point
    Tom Galli

    Durvalumab

    DFK, Wonderful news---NED---how about that! Enjoy your west coast extended vacations! Stay the course. Tom
  17. 1 point
    Tom Galli

    No diagnosis yet

    Lynda, My suggestion: go in your trip. Living with this disease is our ultimate goal. I wasted 3+ years fretting about treatment and outcomes. I could have enjoyed that time. The object of lung cancer treatment is to extend life. Enjoy the extension both before and after treatment. Stay the course. Tom
  18. 1 point
    Rower Michelle

    Durvalumab

    Wow, you must have been really relieved to hear this news! You made the smart call to enlist the experts from day one, along with your Wonder Woman attitude it all played a part! That’s awesome. I hope you have a fabulous trip, if you are able, Moonstone Beach in Cambia California is worth a restorative visit, it was one of our favorite places (near the Hurst Castle). Carry on! Michelle
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